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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 05-08-2003, 12:33 AM   #1
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Hi All,

He's had a very bad evening. His jaws really started hurting him really bad (worse than normal) I plan on calling his doc tomorrow, and fortunately he has a masso. appt. also. Now, I'm sure you all know what that did to me as a mother, but I'm doing all that I can right now, these things take time. (I think that at this point, you all know that I'd travel to the ends of the earth to get him the appropriate help that he needs) He said that he's going to be like this forever. Now, what sparked my mind was when Autumn needed alittle support for doing her exercises, she said that it really encouraged her. If any of you could jot down some kind words to him that things WILL get better, I think that would really help him out alot. (He still has some kind things that I printed out for him when his MRI's came back negative, hanging in his room)Heather, he has a nice post you wrote! He's always asking me what advice any of you have about his problem...seems to trust all of you (since you all know how he feels) more than his own doctor. I hate to ask this, but I need your help..........

Cheryl

[This message has been edited by CherylLynn24 (edited 10-29-2003).]

 
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Old 05-08-2003, 02:47 AM   #2
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Hi Mike & Cheryl,

I had TMJ problems as a teen, too. That was a long time ago and they didn't even know what it was.

I had a lot of "Wrong" treatments through the years.
I know it seems like it's taking forever, but they do know so much more about it now.

I'm getting better "now" after all of the mess they made with surgeries and other stuff. I never would have believed I could get better.

I know coming from an older person, this may not mean a lot to you, but I want you to know, you can and will beat this. Always know in your heart, it's never hopeless. It's not fair, but it is something you can control and get rid of.

Don't let TMJD take over. Always fight to win. Get it in your mind and spirit that you "WILL" overcome this stuff, even if it takes some time, and then you can do anything you want to do.

If an old person like me, can get my life back, you being a "Young Strong Man" can do a lot better than me.

Never Give Up,
(that's how you beat it)

Cymy Sue

 
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Old 05-08-2003, 03:27 AM   #3
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Hi Mike! I'm sooooOOO sorry to hear about your setback. The pain with tmjd can be horrible to live with. It's frustrating too going from test after test.. trying new things.. and then you end up in pain all over again. But, just know that there are many others who face this pain with you. We are all scared that it will be permanent... but there is hope. There are many who are cured all the time. The biggest hurdle is finding the right cure for you since it seems to differ for each person. In the meantime you can't lose hope.. you have to keep fighting.. so that you can recover.. so that you can live a normal life again. I found this quote for you:

"Being defeated is often a temporary condition. Giving up is what makes it permanent."
-- Marilyn vos Savant

You are not alone in this fight. You've got your mom and all of us from all over the world hoping for your recovery. Don't let the doctors discourage you. They don't know what we go through day to day. This is something that can be cured. In the meantime we can try new treatment until we find the one that makes us feel better. Some will work.. and others, like the splint, will not. But never stop fighting until the fight is done!

I've been praying for you and your mother. I found this poem and I pray that the angels surround you in your darkest times.

May the angels keep you til morning.
May they guide you through the night.
May they comfort all your sorrows.
May they help you win the fight.
May they keep watch on your soul.
May they show you better ways.
May they guard you while you're sleeping.
May they see you through your days.
May they show you new hopes.
May they still your every doubt.
May they calm your every fear.
May they hear you when you shout.
May the angels keep you til morning.
More than this I cannot pray.
And if the angels ever fail you.
Then may God be there that day.

(Martha White)

Hang in there Mike! We care so much about you.

panch

 
Old 05-08-2003, 08:40 AM   #4
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In my opinion, if he is not getting better yet, you are seeing the wrong doctors and getting the wrong treatment. With the correct diagnosis and the correct treatment, he should see improvement quickly. This is just my opinion based on lots of experience.

 
Old 05-08-2003, 12:07 PM   #5
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Hi Cheryl and Mike,

So sorry to hear that you are hurting so bad Mike! Just keep telling yourself that you know it does get better. There are good days and bad days. Try to think of the good days to come. I know it is very hard to do but it will get better. I am praying for you!! Keep having faith. I bet you feel better by the weekend!

Cheryl, So sorry I haven't been on for a few days. I have been so busy with my work I do from home this week. And that has caused me to have a bit of a flare up. Mostly feel it in my ears, cheeks and neck this time. The headache isn't too bad. Just that dumb pressure feeling. I called my specialist today and asked if it was okay to go back on the Flexeril again. He okayed it. Boy, was I glad. I haven't had a good nights sleep in about 3 days now.

You try to hang in there too! I cannot imagine Emily having to go through this stuff so I know how terrible it makes you feel. You just want to take the pain away for them. It makes you feel so powerless. I always try to remind myself that Emily is God's child and I am here to take care of her for Him. So I know He will take care of her if I ask Him. But it is so hard to let things in His hands when it comes to our children. But I guess we need to.

Take care, Michelle

 
Old 05-08-2003, 12:28 PM   #6
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Hey Mike,

I understand how hard it is to just get out of bed... but we have to. I know that out of any of us you will conquoer this thing and have a peaceful life. YOu are the one that has the odds in your favor...for one thing you have your mom. The pain can be unbearable but there are also good days to look forward to. One good thing that I can thank tmj for is, it sure calmed my life down (I was a party girl). Not anymore I am on a mission... I WILL GET CURED if it is the last thing I do, but I need some help from you. Please listen to your body even at its worst, try to put up with it as much as you can (even when it is not easy), rest a lot, be GOOD to your mother, one more thing live your life. The more you live (even in this much pain) the more chance we have to beat it. Not living is exactly what tmj wants- so don't give in. When you can't get out of bed - DO IT (gently), go for a walk, look at the clouds, and breathe.
Mike, I also have to say you are in the crazy times of your life - enjoy it, but Listen to your mother, she does know what is good for you.
Heather

 
Old 05-08-2003, 12:36 PM   #7
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I am so sorry that you are feeling badly. Things WILL get better, we just wish we could hurry it along. Hopefully this splint, or possibly a new one soon, will be the answer. Please don't give up hope. You sound like a very special young man and you have a long and (believe it or not) happy life out there waiting for you. Your mother loves you very much. You are very lucky to have each other.

Hope you feel better soon.

[This message has been edited by totallyconfused (edited 10-29-2003).]

 
Old 05-08-2003, 02:54 PM   #8
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Hi Mike,

I'm here to tell you that your TMJ CAN be conquered!! Throughout splint therapy, it's normal to have improvements and setbacks. I began my "road to recovery" at the age of 38 - so your age is definitely in your favour for perhaps making a "speedier" recovery than I did. One thing you have to keep in mind is that your TMJ didn't develop overnight - it was a slow/gradual process - and therefore it may be a while before you realize any noticeable improvement, but it will come!

Hang in there,
Marlene
(the "resident" success story)

 
Old 05-08-2003, 04:39 PM   #9
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((((((mike)))))) I am so sorry you had such a tough night. I know what those are like. Keep telling yourself you will BEAT this thing and get better. I know it's tough to think that when you are in pain, but I believe postitive thoughts bring positive outcomes. I will keep you in my prayers sweetie as you fight your battle with TMJ. We are here if you need to talk because we DO understand what you are going through. I am only 34 and it's tough for me, I couldn't imagine going through it at your age, but Marlene is right, you are young enough to bounce back from this and live a full and happy life painfree!!

By the way you have an AWESOME mom!!!!!!!

Take care and I'm praying for your pain to go away, Jill

 
Old 05-08-2003, 06:30 PM   #10
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Hi Mike:
I certainly know how you are feeling. I often want to give up and end it all too but then I realize that even in my sorrow and pain I touch others lives. I realize that there are others who are in worse pain than I am in and unable to get any help at all. Sometimes when I remember this it just hacks me off worse because in my own state of agony I really can't think about anyone else and their pain. I remember when I was a teenager I wanted everything done right now. It's just a condition of being young and I think the reason for that is young people were not meant to suffer with so much pain as some of us do. Mostly pain was meant for when we are older. But I realize that every time I overcome an obstacle in my life that I become stronger and believe me you will need all that strength as you grow older. But Mike, you have a wonderful supportive mom who will do anything in the world for you. I bet you have no idea how wonderful she is. I have wished all my life for a mom who loved me the way your mom loves you. And you know sometimes that means putting aside some of our pain so that those who love us so don't have to worry so much. I know it doesn't seem like it right now but everything we go through is for a reason and this too will pass. Just not as fast as all of us would like it to. Hang in there Mike, give it time. Your mom will help you find the answer and treatment for you TMJ and pain but you must understand that treatment for TMJ is still pretty darn slow. Look to tomorrow and hang on and remember to give your mom a hug. She loves you with all her heart.
Tiffany

 
Old 05-08-2003, 11:30 PM   #11
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Hello to Everyone,

I want to tell you all, thank you from the bottom of my heart. All of your posts made me cry, you all have offered so much support, and this was a time that He (and myself) really needed that. I gave him flexeril last night and it knocked him out for a good 12 hours, at least. He woke up today feeling better. We read all of your responses together, and at times, he got teary-eyed, too. All of you have inspired him, and have given him the hope that he's needed. His attitude changed as the day went on. I owe all of the extra smiles that I saw today to all of you. I'm ever grateful.

Cymy Sue,
He said that things coming from an "older person" do mean alot to him. He said that older people know alot, because they've been through alot more in life...good and bad. He trusts that after the horrors you've been through,(with surgeries) and are getting better, there is help out there for him. What I'm trying to say is that your story is inspirational to him. Thank you for pushing him to "never give up", it meant alot to both of us.

panch,
Your poem was absolutely beautiful! I had to read it over and over a few times alone (while crying, of course) before I could show him. He liked the quote you had written, also. Thank you for pushing him to keep fighting, and of course, letting him know that people from all over the world are hoping for his recovery. (it made him feel good inside!)

Michelle,
Thank you for your prayers and reminding him that it does get better. He is looking forward to the weekend, after waking up today feeling better. I think that everyone has given him faith, including you. I appreciate that.

Heather,
He giggled when you said that you were a "party girl". He especially liked your "I WILL GET CURED if it's the last thing that I do". He saw alot of will power in you, and it's rubbing off on him, thank you.

TC,
He liked how you wrote that "things WILL get better". He said that it made him feel as if this were a temporary thing that is disrupting his life, and eventually, he will get his life back, in time. Thank you.

Marlene,
He finds your story to be very inspirational, also. Your "TMJ CAN be conquered", nearly made him cry. He needed to hear that improvements and setbacks go hand in hand. You also told him that this problem didn't occur overnight, and that it would take some time before he'd see changes. I've been telling him that for awhile now, and he didn't believe me, but after "Marlene" said it, it must be true! Thank you for offering him the hope that he needs.

Jill,
He said, big fuzzy warm bear hugs to you. (surprised me at his age!) Thank you for enforcing the fact that he can BEAT this thing, and your prayers. As his mother, I appreciate you letting him know that he can talk to all of you if he needs to.

Tiffany,
He liked the fact that you said that "this too will pass". He said that it made him feel like it wouldn't be forever. You also put it in his mind that old mother here, will eventually find an answer and treatment. For that, I thank you, because sometimes he doesn't believe me.


As I said earlier, thank you all so much. I don't know what either of us would do without all of you. We both appreciate your advice and support all of the time. It was sort of funny the other day, my Mother came over to visit, and a few of your names were brought up while talking about his problems. My Mother asked who they were and I said, "very dear friends." All of your names are mentioned so frequently around our home, one would think that you're all either very good neighbors, or family. Thank you again, and you're all in our prayers.

Cheryl

[This message has been edited by CherylLynn24 (edited 10-29-2003).]

[This message has been edited by CherylLynn24 (edited 10-30-2003).]

 
Old 05-09-2003, 01:24 AM   #12
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GenDen,

I don't quite understand what it is that you mean by the correct diagnosis and the correct treatment. I have had a diagnosis for him made by 2 dentists, 1 ortho, 1 oro surgeon, 1 tmjd specialist and most currently by his pediatrician (who consulted other doctors on his case) and each diagnosis was the same-tmjd of muscular origion. At the same time, I have had ENT's, and Neurologists examine him and run tests, only to confirm the same diagnosis.

From what I've learned, the treatment for this dysfunction is splint therapy. Now, from what I understand, this takes time, and I was told by his physicians that it would not be a quick improvement, it would be a gradual one, and that we would have to be patient. I really do believe that he has a correct diagnosis, I think that his current splint (he's had for a week) proves this. (looks like it was run over by a mack truck!) He's got a serious clenching problem.

It sounds as if you've been through the wringer with a proper diagnosis in the past. Is there any other direction that I should be looking into? I do appreciate any advice.

Cheryl

 
Old 05-09-2003, 08:55 AM   #13
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Hey Cheryl, you are not alone with the name thing. My husband hears all about you guys. He told me that he was really happy that I have found people that I can connect with over this. Not knowing for years and now have friends to talk about it with because they understand is very cool.
The people that are around me try to understand NOW but where were they when I did not no what was wrong with me? I try not to hold resentment towards them, but it is hard. I used to try to explain how I felt but no one seemed to care (besides Micaiah). Now I have my mother - in -law always asking about my jaw. I can't believe just knowing the name of this disorder changed the way people deal with me.
I try to believe they are sincere but why did they wait until now?
Heather

 
Old 05-09-2003, 12:29 PM   #14
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Cheryllynn,

I am sure I was too negative. You have done all the right things in getting a diagnosis. I have such a soft heart for children, it pains me when they are in pain. I guess where I am coming from is that over the past six years every treatment I have had, I have been told it would take time, so I patiently endured the pain and waited for the time. I know I waited too long with treatments that didn't work before I moved on. You are early in the treatment and it will probably work for him, but I would caution against being so lulled into "it takes time" that you don't prolong his pain unnecessarily when it is obvious that the treatment isn't working. It is also possible to have the right diagnosis and the wrong treatment/wrong splint. We are all in such a dilemma. My heart goes out to you because I know it is so hard to see a child in pain. I know I would much rather take my child's pain on myself. You are doing all you can and deserve the Mother of the Year award and reward yourself with something special on Mother's Day.

 
Old 05-09-2003, 01:28 PM   #15
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Hey Cheryl & Mike...
Sorry I wasn't able to respond to this sooner! I'm with you Mike...I've had surgery and still am having setbacks. I spent Wed. night in Lakewood hospital...we all know what a fun place that is!

I'm hanging in there, but just so you know Mike, you'll have good days and bad days. I hope and pray that the good days are so good that the bad days just fade into tiny little dots in your memory! It takes a great deal of patience and faith that you WILL get through this!

Just remember, when you're up all night and thinking that you just want it all to end, that there is a light at the end of the tunnel! We're holding our flashlights as high as we can for you...sometimes the batteries just need to be replaced!

We're here with you buddy...when it gets too ugly, just remember it's two for one before six at Malley's! Anytime...I'm there! If ice cream can't help....nothing can!

We love you Mike!

Take care!
Jennifer

 
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